Taxotere, Carboplatin and Herceptin
Comments
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Cupcake and Anne: When I got my last MUGA, the technician explained to me that the results that go in to the report are VERY subjective according to the tech doing the scan and the reading. So you are much better off if you have the same tech every time. He said they can very as much as 5 points with another set of eyes as a large portion of the reading is just opinion. By keeping the same tech each time, it keeps YOUR case in context. JMO from the guy that has done both of mine.
Blue and Anne: I really can't beleive this is almost over. I am not worried about the herceptin. After a bi-lateral mastec. and 6 rounds of chemo, I can handle anything!
For those just starting: Having the water by the bedside is a GREAT tip! Even if you only get down a sip. Drinking the water is so important and it really gets this crap out of your system faster.
Gramma Carolyn: Just keep being you!!! You are such an inspiration!
Lisa
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Lisa, you sound so strong and confident. I hope that some of that is rubbing off on our new friends. You should be so proud. My thoughts are with you tomorrow!
Mason, that is very encouraging news about your MUGA #'s. A jump to 66 from 52 is great.
Blue, just hang on for a few more days. This last month has been a little rough for you, but you are almost done. That's great news about your new grandchild. The baby's arrival at the time of your new beginning is so perfect.
It was beautiful day here in New York. I find that when the weather is sunny and warm, my moods warm up too.
Stay strong ladies.
Anne
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Thank you ladies for all of your advice and tips with this awful time we are going through. It has been such a relief to know what to expect. My first treatment starts this Thursday, so my man will be taking me out Wed. for an early Valentines dinner
As for the port, I really just dont want any more scars on me than I have to have. I dont want to be reminded of this time of my life everytime I put a bathing suit on or even look into the mirror. So unless, the doctor strongly recommends it I think that I will try doing this with the port. The nurse did say that my veins looked very good and that I could always have it added later if I choose.
Congradulations on your last treatment!!! Please keep coming back for those of us who are just starting with any questions or concerns.
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rayhope: Wow didn't know that. Here I went through it all and never knew that SE was there. Glad I didn't get it. Thanks for sharing.
Blue: That is good to know on the H. How do you know how to stage? I began as a 111A because the cancer cells was in my Axillary Lymph Nodes so because they thought they metastasized to there from a tumor. There never was a tumor so I fall into the Occult Primary. Since chemo they have no way of knowing how many Lymph Nodes were involved because they are all clean. What the writings are on the Occult Primary is we fare better than a stage 11. That is why I questioned how they could set me up for Radiation without a tumor size, or Lymph Node involvement. I don't know now what stage I ever was classified as. I did some research and came up with some medical files from 2003 of non cancerous cells taken from that breast, but can't figure out the lingo. Maybe you can help. Give me a call if you can help.
Carolyn: I forgot to respond back to one of your post in the nails breakage. I had good nails until after chemo now I can't keep them from chipping to the quick. I had a line across them and the onc told me it was the time I started the chemo. Seems like when that line got to the end of the finger is when they started breaking off. I wonder if they will get any better later on?
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Bluedasher, thanks for the info. I think they told me that in the chemo class now that you said it but I forgot. I think I lost a few brain cells along the way! It seems like a long bad dream but I do feel like I am waking up from it now. My life was tx ,sick and then good for a few days and tx again for the 6 times. I did not eat well after my last tx. I would eat a little and start getting cold chills like I was going to be sick so at least I could keep my weight down and not have to worry about getting it back for the next tx. On radiation they just don't want it going too far one way or another but they X ray every so often to make sure it is still all lined up like they had planned. I am so blistered on my back just under my arm pit. I had 2 blisters to pop there but I find myself laying on that side at night so I may have done that in my sleep. My chest itches like crazy and has bumps so I am not sure they will continue my radiation today. The doc said he was worried I was so red. I was worried a couple of weeks ago! My doc will be back this week I think and I will also see my onc so I am happy about that. I trust my onc more than the radiation docs. I also get my H Wed. It will be a busy day I guess.
My hands did not blister or get sore on chemo but I have the tingling in them a little now. It is just annoying not bad.
Lisa I was like you. I did not celebrate the last tx but I felt like I was not finished and I think when I finish the Herceptin and radiation I will feel finished. Of course then waiting for 5 years to see if anything comes back. I remember my son in law going for his cancer check ups, he would be so nervous worrying he might have it again. It has been 18 years now and he is a little less concerned but he still goes for check ups.
Carolyn
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Morning ladies! I am in the chemo room and all hooked up to #6! Yippee!!!
To all you just starting, this is a great feeling and you guys will be here faster than you think!!
Have a great day! I know I will.
Lisa
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Lisa Hooray for you!!! can't wait to be in your shoes! Im on Tx2 still not really any SEs Tired occasionally but tolerable! Hair still shedding couldn't take that got a super short cut it is very sexy never been this short it is a little cool on the neck sometimes.Lisa we have horses too. My husband and boys Teamrope I ride as well just got my own gentle mare before my Dx havent been on her yet,since everything happened. Bold I have been having vision problems to feels like my contacts are not strong enough my left eye twitchs all the time I can watch it in the mirror do it Wierd!! I so agree with my2boys Water is SO IMPORTANT I can tell if I need to drink more cuz I dont feel as well! So DRINK DRINK DRINK and then DRINK some more. Also someone had posted about Heavenly Hats I dont remember who it was but Thank you I got a box with the nicest softest caps to sleep in and wear out when its cold ,A teenage boy started the organization how amazing that young man is.On the port I didnt have mine my 1st Tx got it after so glad I did it makes its so much easier I was put out for mine .I have great veins but this will ensure I have them at the end! Herceptin for a year is alot of sticks. Also I had an IV on my left where I had all 3 surgerys and had nodes removed but my Surgeon here in small town USA said that it is ok that the myth about nothing on that side is not such a big deal now as it was.So Smile follow your own head & heart on that decision 0 -
Cupcake Honey who needs a brain they are way overrated mine has been gone forever the chemo just gives me something to blame it on. You have the biggest heart thats what is important.The goody bags how awesome I love it you are so sweet!! I also look for ways to give back ,My best friend and I will do the Susan Komen walk in August,Tha Avon one is in June I wont be quite ready for that I believe I will be starting Rad about then.They do a local walk here and a Barrel Race for awareness, I plan to be involved in whatever I can to help everyone I can. 0
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Rockstart! Yea! Another horse person!! Please go to me website and check out the "Just Ride" and "Photo Album" pages. I am in the process of adding a "Our Horses" page. When all this is over, I am going to organzie a BC fundraiser using horses. I think I will do it Poker Ride style. I have a wonderful park close to me that is great for that kind of event.
My website: www.JohnnyRebelAcres.com
In approximately 1.5 hours, I will be done with chemo (herceptin doesn't count).
Doc said my MUGA was unchanged - thank God! He is sending me for a new test that tells you/him if I am going to properly metabolize the tamoxifen. If not, we will discuss either a pill that causes real menapause (apprantly chemopause isn't real) or having me ovaries removed. I told him the ovaries were expendable. I am all for removing ANYTHING that is unneccesary and could become diseased.
Have a happy day!
Lisa
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Congrats Lisa! I am thinking of you today
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Lisa-congrats on #6. It is the day we are all waiting for. Hopeful your s/e are kept to a minimum. The worst is over! YEAH!!!
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Lisa I checked out your website.We have a group here that does a Bikini Barrel Race they sell the racers and the money benefits breast cancer. Also because we are part of the Rodeo family ih our area, a good friend of ours put my name in to receive an amazing gift of $2500.00 from the Lancaster Barrel Race for Breast Cancer for me to use for me.I was blown away by this amazing gift from someone who has been through it reaching out to me,I want to give back in anyway I can . It is incredible all the wonderful people in the world that are there for you even if they don't know you personally. 0
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Super for you Lisa!
This is it baby. Radiation is nothing at all. A piece of cake. Takes you longer to get there than do it. Walk in walk out. No shots, no nausea, no headaches. Yeah! I can do this hands down. Rockstarmon: I had forgot about the heavenly hats. I sent away for it too, but never heard from anyone. Glad you got yours. I guess there are just so many patients out there who sent in. Thanks for the compliment, that was sweet to read. We all can do something for someone after going through this.
My onc is still out but the fill in said today that they would just as soon hold mine until I am done with rads. Guess the ol ticker needs gentle handling. Also could be cause there is no cancer there to keep growing. I will only miss one during this time. Things are good, I feel good. I have to share what I did to my husband this weekend. We were outside working in the yard and he wanted me to do something and I weakly said..."I can't". He said why not and I put my finger up to my cheek and said, "cuz I have ca....ncer"...lol we both got a chuckle at that time. He thought I was milking it..lol YA THINK. Have a great day gals...I sure am....
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Cupcake: You ain't got no stinkin' cancer!!!!! Way to go on the rads!! You can do it standin' on your head!!!!
Rockstar: What an amazing gift. Cancer people and rodeo people a re good people. When I do my poker run, you want to come down here and ride!! I have spares horses!!!! And a nice little apartment next to the barn!
Since all this BC mess started, I have been so touched time and time again by all of the wonderful people I am blessed to have in my world. I started receving e-mails yesterday and all thru today, congratulating me on my final treatment. Then today, as I was leaving the onc's office, my truck has bundles of helium balloons tied to it and a big poster board on the windshield from all of the students in the department: Mrs. Long, Congratulations! You Rock! and they all signed it with a kind phrase or two.I cried while I was trying to figure out how to get the baloons untied! Then I get home, and my house has been transformed!! There are vases of flowers everywhere!!! Banners slung frum corner to corner, over the fireplace, on the enterainment center, confetti, streamers, garland, balloons tied to anything that would take a tied ribbon, even the lamps have streamers, and the paddle fans!!!! I just stood in the middle of my family room with my jaw on the ground. I knew my hubby must have had help and when I called to thank him, he said he had called on some freinds of ours to help him. It is just amazing. I can't beleive he thought of ALL OF THIS!! It must have taken them a couple of hours.
I have to take pictures!!!!
Gotta go cry some now......
Lisa
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Sailor, if it were not for Ambien, I would not be sleeping at night. Ask your Dr. if he would prescribe something for sleep--mine did.
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Hi, I am wondering if there is anyone out there going through this now?Most of the posts are from 2007. I am really nervous about all this and hoping to find someone to share similar feelings. I am scared of losing all my hair. I have started to lose some and it comes out more everyday. I will go to my next treatment tomorrow will it all be gone after the second treatment? Help I am so nervous.
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Katherine, you did not go far enough. We are now on page 96!!!! I just posted 2 or 3 times today!
No need to be scared, we are here for you. Sorry, you are going to lose you hair. No way around it. Just keep reading!
Lisa
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Katherine Relax you have found a wonderful place to be here with us everyone here is an angel. The hair issue I cut 6" off mine in readiness. Day 18,19,20 of my first Tx I shed like a dog my 2nd Tx was a week ago today on Thursday I called my hair gal cut it super short It is still shedding a bit I have new beautiful hair aka [wig] when it does.This is just a bump in the road for us Together we are strong and can help each other 0
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Paula - I'm glad that you contacted heavenly hats. I wear their hats all the time. Katherine, this would be a suggestion for you. Go to Heavenlyhats.org. Request a hat package and they will send you a box of hats (no charge). Try not to worry about your hair too much. Most of us lost it by the third week of treatment. It's something that you will adjust to. I was VERY upset when I lost my hair, but I quickly accepted it and now that my chemo is almost done, I'm looking forward to my hair growing back real soon. If you need to vent, please come here and let it out. We are here for you.
Lisa - Wow what a story! Your husband sounds like a real gem. Congratulations dear, you made it through! I'll meet you on the other side of #6.......in two days, O.K.? I'm not happy to hear that chemopause isn't real. I was happy to be in chemopause. It dries up my endometriosis. I hope that I don't start getting periods again when I'm done with chemo. Get some rest, you've had quite a day.
Cupcake - I'm sorry to hear that you never received your hats. I guess the good news is that your hair grew back so fast, so now you don't need them, right? It's nice to hear that you and your hubby were laughing. I bet you never thought that you'd see the day that you would be able to joke about cancer. You are in such a good place right now. Congrats.
Have a great night ladies.
Anne
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Anne: I also did not know chemopause was not permanent! My doc agreed with my spot decision to get rid of the ovaries. The pill or the surgery nets the same results. I will be thinking of you Wedneday! It is a great feeling! Between being done, having steroid high and it being a full moon, I am WOUND UP!
Lisa
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duneoaks Thanks! Dr. was glad to prescribe, but we wanted to see if I could ride it out. I feel like I have so many chemicals in my body that I wanted to avoid one more. I am now back to feeling more normal and not speedy. They think the hyper feelong might be a rebound from going off the Decadron, even though I weaned slowly. I am now getting headaches. It ended up that I was drinking too much water and not enough other things like fruit juice or gatorade, so it threw my electrolytes off. Drinking some gatorade each day has helped, but I am still getting headaches. Does anyone know if headaches are a common SE?
Katherine We are here following right behind you. 2nd Tx is on February 18th.
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Katherine, welcome to Camp Chemo as we call this thread though I'm sorry for that you have to go through this. TCH is very doable though the side effects can be a pain for a while. For new posters, they have a limit on how often you can post per 24 hours. That was pretty frustrating when I was new and had so many questions. If you run out and have an urgent question for this thread, you could use the private message function to talk to one of us.
Anne, I have read that the older you are (the closer to when you might expect to go into menopause) , the more likely you are to stay paused by chemopause. I'm probably passed manopause - I had no periods for 13 months so I thought I was done then I had one just before I got the mamogram that found the lump (and had to have a uterine biopsy because unexplained bleeding can be cancer there - fortunately it was negative). The ob/gyn said that was probably a "last hurrah" and I probably wouldn't have any more.
Lisa, that was a nice post to Katherine but if she doesn't know about getting to the end of the thread she won't see it. I sent her a private message. I hope she notices that. I think I would go for getting the ovaries out too vs the pill if I was hormone postive and not already in menopause.
Cupcake, I don't know if I'll have any answers for you on the 2003 biopsy. I know how to read the report when there is cancer but not so much when there isn't. Did they do the biopsy that typed your cancer as HER2+ on the lymph nodes or did they find something to biospy in the breast before chemo?
There is a good description of staging breast cancer on the Symptoms and Diagnosis part of this website at:
http://www.breastcancer.org/symptoms/diagnosis/staging.jsp
Postive axillary lymph nodes can place you at anything from stage IIa to IIIb depending on the tumor size and how the lymph nodes are affected. The page above says one is stage IIIa if the cancer that has spread to axillary lymph nodes that "are clumped together or sticking to other structures". I'm not quite sure how they decide that especially if they didn't do surgery before chemo. If the nodes are postive but don't have the description above and its in the axillary nodes but not other lymph nodes, one is somewhere in stage II.
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As for reading path reports!! If your path report and your onc says NO METS, nothing invasive beyond the chest cavity!! And you had the TCH, rads, etc, Your odds are awesome!!! DON'T GO LOOKING FOR TROUBLE!! We will be fine if we are in the above parameters. Yes, anything can happen, but please don't go looking for it. Life is too short!
To be obsessive about what may go wrong is potentially upsetting and not fair to the campers that are metastactic
We all will stay strong!
Lisa
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Hello Sisters:
I am home from TX3 half way through. Yipppeee. Lisa I cryed when I read your post. I am truly so happy for you and all the sisters having there last.
In regards to menopause you can stop your periods and still not be post menopausal. You could be peri menopausal. So you need to have your Estradiol levels done. I have not had a period in 9 years and I still am at a level of 32. So go figure I am 54 years old I will be 55 next month. I am hoping that I will be post at the end because I do not want to do hormone therapy.
I might opt for the radiation seed or proton inhibitor for radiation treatment. Both are equally good on outcome but the proton inhibitor only touches the part of the breast where the tumor was so it does not go into the chest or burn the skin. The building that you go to is a big a a football stadium. The reason is that they have to go around the building to get the speed to enter the body. Out of this world huh?
Sorry the steroids have got me sooo wound up and I hyper normally.
Think good stuff.
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Bold, I am on a steroid high too, It is 11:30 pm in So Fla and I am wound up!
Lisa
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Lisa: Last night I slept about an hour and a Half. When I was trying to sleep I day dreamed about going riding. I miss it soooooo much. I am so happy for you gals that are living the dream. Your horse is so beautiful that you are on in your pic Real tall how many hands. (or your real smal lol) You sure are lucky.
We will beat this and it will be a memory that changed us. How it changes us is up to us. But the beautiful women we have met on this journey have proved to me that it is for the better. I hope we sleep a little tonight.Buzzzzzzzzz. Hate this feeling at night. I would be kicked of any baseball team I am going to take Advil PM.
Good night
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Good Morning!
BOLD I hope you finally got some sleep last night. After I finally settled down, I slept like a baby and I NEVER do that after a tx. Up bright and early to go to work - something else I never do after a tx. But my substitute teacher was so horrific, it would be more stress to stay home and worry about my students getting behind and being taught wrong than it will be to just do it myself. Thanks for the compliments on my 4 legged boy. His name is Johnnie Reb - John for short. He is a Missourri Fox Trotter and a retired show horse from Texas that I have turned into a trail horse. He is 16.1 hands and I am 5'2" (for you non-horse people, he is on the big side). Even though I am the proud owner of 7 horses, John is my baby.. Many tears have been cried into that mane over the past 6 months. I don't know how I would have made it thru all this without him. Before all hell broke loose last summer, John and I were taking dressage lessons and we are going to start that up again in about a month. I also have a friend that wants us to join her in endurance competition - don't know about that, I'll have to talk it over with John. Right now, I just want to get enough muscle and balance back for an extended canter that glides into smooth, long gallop down a country road. If you missed the website I posted above go to www.JohnnyRebelAcres.com and click "Just Ride" and "Photo Album". It can never be said that my horse friends and I don't know how to have fun! (I am the one frequently seen with the reins in one hand and a beer bottle in the other, mugging for the camera
- those were the days!)Bold, I am not that well versed in CA geography, but on think you are in so cali? Once your chemo is over, take a trip up to see Cupcake and Blue. A few years ago, a dear friend was trying to recover from a nasty divorce, she found a wonderful riding stable in the Napa Valley region and spent a day riding. She said the views of the vineyards and vista's of the hills from horseback was one of the most healing, cleansing things she has ever done.
I have to get up and get ready for work now. Time to emerge from hell and re-join the world!
Have a great day campers and I will check in at lunch, Fl time!
Lisa
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Hi there All ..I have chatted to some of you guys before ..haven't been on in a while .My mum is day 8 after chemo and I have acouple of questions to ask ..hope you can give me some guidance
She has areally bad sensation in her head like there is a weight on top of it ..she says head feels funny all the time any one experience this ..she also has a sensation in her nose ..
Any suggestions ?tks hope you are all doing well
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Sara - I am sorry, I can't help you. I have never had that feeling. Maybe some of the other ladies will chime in. Do tell your mum not to be surprised if she develops a nose bleed, they are very common. Good luck and come to us anytime you need help.
Lisa
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Well, the last chemo drugs have been pumped in and are doing their work. When I first saw my onc this morning, she suggested not doing the last one because I my platelets were low again and because I had had a hard time the last chemo cycle. We hadn't talked about nausea yet so she was just referring to having had to come in for IV fluids mid cycle. But that doesn't seem that uncommon here. Anyway, the reason I got so dehydrated last cycle was that I had a cold which made my throat uncomfortable on top of nausea. Yes, yes, I know - all the more reason to push fluids but I just couldn't get them down. Anyway that wasn't likely to recur this cycle so it seemed a lousy reason to stop at 5 and given the aggressiveness of those HER2+ cells I preferred to get the full six chemos.
Also I'm a bit anemic though really not that low - about the same as I have been at this point in the cycle most of the time. Not low enough to need a transfusion and this is around when I get my nadir.
I pointed out that last time my platelets were low on the pre-chemo test I took two days before and came back up by chemo day. (Maybe I should have waited until yesterday to get the blood test but I could feel that I was anemic and wanted to see if I was getting to the point where I needed a transfusion with time to set it up before chemo day.) So she sent me down for another blood test to see if the platelets had come back up since Sunday. They had and she let me do the last chemo. I'll have to be careful to drink my fluids.
My red cells were down some more but still above the transfusion level. I'm also to come in for a blood test in a week to check if I need a transfusion. I expect that will show better red cell counts than now as I'm usually low around 21 days and then come back up. (Various side effects have made me come in for blood tests at different times in my cycle and my HMO has an online tool for checking blood test results that will chart or graph your results.) If I get low enough to need a transfusion, it will be around the time I come in for my first Herceptin only in 3 weeks (when I'll really count chemo ended, but I'm hoping to stay above that point.
Even though I won't consider chemo over for three more weeks, I'm finding that I'm really happy about having had my last chemo treatment.
Sara, I'm not sure about the weigh on the head thing. Is it possible that she is having sinus pressure - that would be pain or pressure usually above the eyes or around the nose. I get that occasionally due to allergies but have gotten it a bit more on chemo. The nose can feel drippy and a bit funny because chemo is making it lose the nose hairs but I don't know if that is what she is describing. Does her oncologist have an advice line. Mine has one during the day staffed by chemo nurses and they are often better on the minor side effects than the onc.
On that topic, everyone, I found out what the red dots are under my skin. They were blood red and about the size of a pin head. I had them mostly on my shins a few days before the last chemo and my onc had no clue. I thought they were due to low platelet count but she didn't. They went away in a few more days. A couple of days ago I noticed just two on my forearm again when my platelets were low. I showed them to one of the chemo nurse and she said the are "patechiae, little blood spots that form because blood leaks from a very small blood vessel. Low platelet count is a common cause (score one for the engineer over the onc). The chemo nurse said that, when they are from low platelets, they most often appear on the extremities which matches my experience too.
Bold, when I was a pre-teen/early teen, there were places near Griffith park where a friend and I would rent horses and go for trail rides. They would just give us the horses and let us ride on our own on the trails around here. That was a nice place to ride. I wonder if they are still there.
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